Congress report of the seventh international meeting on psychosocial aspects of genetic testing for hereditary breast and/or ovarian cancer (HBOC) and hereditary non-polyposis colorectal cancer (HNPCC)

2002 ◽  
Vol 11 (6) ◽  
pp. 536-539 ◽  
Author(s):  
Jochen Jordan ◽  
Gareth Evans ◽  
Gerry Evers-Kiebooms ◽  
Claire Julian-Reynier ◽  
Kathryn Kash ◽  
...  
1999 ◽  
Vol 15 (1-3) ◽  
pp. 152-153 ◽  
Author(s):  
M. Decruyenaere ◽  
G. Evers-Kiebooms ◽  
E. Claes ◽  
L. Denayer ◽  
M. Welkenhuysen ◽  
...  

2021 ◽  
pp. 102-109
Author(s):  
Sukh Makhnoon ◽  
Susan K. Peterson

Psychosocial factors influence colorectal cancer (CRC) genetic testing decisions and risk management strategies. Psychosocial research on hereditary CRC has focused on understanding individuals’ motivations and decisions regarding genetic testing, the psychological impact of genetic risk notification, the effects on family and interpersonal relationships, and factors influencing the uptake of risk reduction options (e.g., screening, risk-reducing surgery, or chemoprevention). Overall, the literature on psychosocial aspects of hereditary CRC suggest that despite initial fears, negative psychological impacts of genetic testing are often absent or modest, and adverse impacts, if observed, are short-lived. Due to the shared familial nature of genetic information, patients utilizing CRC genetic testing also experience novel psychosocial challenges in terms of family communication and childbearing. Positive psychosocial benefits such as relief from uncertainty and satisfaction of curiosity have been less frequently examined. Psychosocial outcomes vary across types of genetic testing, test results, gene penetrance and associated cancer risks, and various clinical and personal factors. For example, the psychosocial outcomes in response to an uncertain test result from a moderate-penetrance CRC-related gene may be different from a negative test result in a high-penetrance gene. This suggests that generalizing psychosocial outcomes from the various areas of scholarship may be unwise. Psychosocial aspects of genetic testing deserve attention by researchers and clinicians to design and deliver tailored genetic and psychological counseling support services geared to the ongoing needs of patients and their relatives who face genetic risk for colorectal cancer.


1997 ◽  
Vol 833 (1 Cancer) ◽  
pp. 190-194 ◽  
Author(s):  
SALLY W. VERNON ◽  
ELLEN R. GRITZ ◽  
SUSAN K. PETERSON ◽  
CHRISTOPHER I. AMOS ◽  
WALTER F. BAILE ◽  
...  

2014 ◽  
Vol 146 (5) ◽  
pp. S-408
Author(s):  
Yezaz A. Ghouri ◽  
Sachin Batra ◽  
Nirav C. Thosani ◽  
Sushovan Guha

2017 ◽  
Vol 35 (34) ◽  
pp. 3800-3806 ◽  
Author(s):  
Christopher P. Childers ◽  
Kimberly K. Childers ◽  
Melinda Maggard-Gibbons ◽  
James Macinko

Purpose In the United States, 3.8 million women have a history of breast (BC) or ovarian cancer (OC). Up to 15% of cases are attributable to heritable mutations, which, if identified, provide critical knowledge for treatment and preventive care. It is unknown how many patients who are at high risk for these mutations have not been tested and how rates vary by risk criteria. Methods We used pooled cross-sectional data from three Cancer Control Modules (2005, 2010, 2015) of the National Health Interview Survey, a national in-person household interview survey. Eligible patients were adult females with a history of BC and/or OC meeting select 2017 National Comprehensive Cancer Network eligibility criteria on the basis of age of diagnosis and family history. Outcomes included the proportion of individuals reporting a history of discussing genetic testing with a health professional, being advised to undergo genetic testing, or undergoing genetic testing for BC or OC. Results Of 47,218 women, 2.7% had a BC history and 0.4% had an OC history. For BC, 35.6% met one or more select eligibility criteria; of those, 29.0% discussed, 20.2% were advised to undergo, and 15.3% underwent genetic testing. Testing rates for individual eligibility criteria ranged from 6.2% (relative with OC) to 18.2% (diagnosis ≤ 45 years of age). For OC, 15.1% discussed, 13.1% were advised to undergo, and 10.5% underwent testing. Using only four BC eligibility criteria and all patients with OC, an estimated 1.2 to 1.3 million individuals failed to receive testing. Conclusion Fewer than one in five individuals with a history of BC or OC meeting select National Cancer Comprehensive Network criteria have undergone genetic testing. Most have never discussed testing with a health care provider. Large national efforts are warranted to address this unmet need.


2021 ◽  
Vol 11 (6) ◽  
pp. 543
Author(s):  
Anna DiNucci ◽  
Nora B. Henrikson ◽  
M. Cabell Jonas ◽  
Sundeep Basra ◽  
Paula Blasi ◽  
...  

Ovarian cancer (OVCA) patients may carry genes conferring cancer risk to biological family; however, fewer than one-quarter of patients receive genetic testing. “Traceback” cascade testing —outreach to potential probands and relatives—is a possible solution. This paper outlines a funded study (U01 CA240747-01A1) seeking to determine a Traceback program’s feasibility, acceptability, effectiveness, and costs. This is a multisite prospective observational feasibility study across three integrated health systems. Informed by the Conceptual Model for Implementation Research, we will outline, implement, and evaluate the outcomes of an OVCA Traceback program. We will use standard legal research methodology to review genetic privacy statutes; engage key stakeholders in qualitative interviews to design communication strategies; employ descriptive statistics and regression analyses to evaluate the site differences in genetic testing and the OVCA Traceback testing; and assess program outcomes at the proband, family member, provider, system, and population levels. This study aims to determine a Traceback program’s feasibility and acceptability in a real-world context. It will account for the myriad factors affecting implementation, including legal issues, organizational- and individual-level barriers and facilitators, communication issues, and program costs. Project results will inform how health care providers and systems can develop effective, practical, and sustainable Traceback programs.


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